His working diagnosis since he was a few months old, has been SMA (Spinal Muscular Atrophy) but testing for it has come back negative twice. And once he started getting the seizures in 2010, the muscle specialist said that it wasn’t SMA. He has had several blood tests for several conditions, all of which have come back negative. Every condition that they think he may have, and have tested for comes back negative. He has had an MRI when he was about 2 which showed patchy grey areas, but the neurologists said that his brain was still developing so it wasn’t conclusive. He currently needs another, but they are afraid to repeat it, because he stopped breathing during anesthesia with the first one. He has had about 3 EMG tests to assess the health of his muscles and nerve cells, all of which confirm that they do not work. Jaivaun has had a whole genetic workup done, because the doctors started thinking that perhaps what he has was something genetic. But still, to no avail, genetic testing showed nothing.
Meanwhile, the frequent emergency room visits and long hospital stays continue. Some for the seizures, but most for respiratory distress. He was intubated for about 3 weeks when he was 2 because of trouble breathing. On two or more hospitalizations, they said it was pneumonia, one was the flu (although he got the flu shot), another Pneumonia and RSV. Most of his other hospital stays have just been labelled “upper respiratory infections or reactive airway disease." Jaivaun also has scoliosis and hip dislocations for which he has to have surgery at a later date. He has contractures of the hip and knees, severe sensorimotor neuropathy, degenerative muscle disease, and many neurological issues.
The genetics doctor also thinks that he has a mitochondrial disorder, but she cannot yet find it.
Currently, he is in ICU at NY Presbyterian, and had to undergo 2 surgeries. One was for a tracheostomy (breathing tube), and the other for a feeding tube. He has been there for 3 weeks now, for the same issue, trouble breathing. They did a video x-ray and it showed that his diaphragms are not working, so he was using all his other muscles to help him breathe. The doctor also said that this is why he is also not gaining weight, because he is using all of his calories just to breathe.
She also said that after the surgery he cannot go straight home. He has to remain hospitalized for another week, and them he has to go to rehab. She said he will need a hospital bed, wheelchair to hold the ventilator, as well as a lot of other medical equipment. Jaivaun currently shares a room with us, so we have to do some major house modifications to provide him with the care and space he is going to need . We are seeking any help to bare with the rising hospital costs and renovating our home to accomodate him and his medical equipment when he is released.
So GoFundMe is asking for some additional information:
My name is Pricy Vidal Francis, I am the mother of Jaivaun Francis. We live in Brooklyn, NY. This page was created for my son, circumstances as described above. Funds will be used for home renovation and medical expenses.